5 week old with forehead hemangiona-please help! - Page 2 - Vascular Birthmarks Foundation Forum
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  #11  
Old 01-14-2011, 04:29 PM
phoenixihc phoenixihc is offline
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Thanks Missy.

Kate.. the first pic is at a few weeks old and you see that her mark on her forehead is very small and pink. Then the second pic in is june at 9 months old where you can also notice a lump under her right eye where she had a deep hemangioma. And finally the last one dates on december at 15 months old.
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  #12  
Old 01-17-2011, 05:58 AM
kate kate is offline
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Thanks for that phoenixihc, my daughter's seems to be the same size at 6 weeks though as your daughter's at 9 months! Did it grow much after 6 weeks?
The pediatrician has said he will prescribe propranolol but any monitoring it seems will be up to me. All he will do is the prescription. Is this unusual?
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  #13  
Old 01-17-2011, 08:32 PM
phoenixihc phoenixihc is offline
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Kate.. My daughter's H grew up until she was about 6-8 months old. But I know this time frame can vary per child. As for the monitering it was up to us as well. A pediatric Dermatologist is the one who prescribed it and then it was for us to monitor. Although we did see the Derm on a weekly basis until our daughter was up to her full dose. We had to take her tempature and heart rate (not obvious to do ugghh..) after every dose until we got to her full doses to make sure her heart rate wasnt affected. But it turned out to be easier than I thought it would be once I got used to it. Now that she's on full dose we see the Derm every 6 weeks.

BTW, if you do get the propanolol, ask the pharmacist to add flavoring to the mix. My daughter loves it.. makes it so much easier!
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  #14  
Old 01-18-2011, 05:05 AM
kate kate is offline
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Well, good news! Have been referred to Prof. Swee Tan in Wellington so hopefully we will be able to start the propranolol! I hope he thinks it's serious enough.Has anyone else dealt with him??? He looks an amazing man in any case.
Thanks for the tip Phoenix!
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  #15  
Old 01-18-2011, 12:23 PM
missy missy is offline
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I have always heard great feedback about Swee Tan. You should be in good hands!

Missy
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  #16  
Old 01-18-2011, 01:29 PM
phoenixihc phoenixihc is offline
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Good news Kate. Keep us posted on your daughters progress
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  #17  
Old 01-19-2011, 01:49 AM
nickbar nickbar is offline
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thank you for the update. Look forward to good news.
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  #18  
Old 01-20-2011, 01:25 PM
Jen2586 Jen2586 is offline
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Hi Kate
My little girl is 7 weeks old and has a hamangioma on her left eyelid. She was started on propranolol 1week ago and we have already noticed a huge difference. This was prescribed by her pediatrician and we are currently waiting for an appointment at the Royal Brisbane Hospital as they gave a clinic there specializing in hamangiomas. Behaps you could try getting in contact with them if you are still having issues finding a specialist in NZ. Good luck.
Jen
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  #19  
Old 01-22-2011, 04:01 AM
kate kate is offline
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Thanks everyone for your support. Looks like she will definitely be starting the propranolol from Feb 1st with Swee Tan. He said they're also doing a trial with captopril.Anyone tried or heard of this? We are so relieved!!!
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  #20  
Old 01-22-2011, 03:46 PM
smurph smurph is offline
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Did you try emailing Dr. Levitin? He has been great in getting back to me. Good luck! I hope you are able to find a doctor who can help you.

Shannon
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